Autism is not a condition of childhood. Autism follows the person. It follows the person into the workplace, the community, adult relationships and health care. Until recently, however, little attention has been paid to issues surrounding adulthood with autism. Fortunately, we have now begun a national dialogue, and Autism Speaks is bringing its voice—and resources—to the discussion in a big way.

On January 26th, Autism Speaks held a research summit entitled, “Adults with Autism: Sharing Ideas, Filling the Gaps,” in Chapel Hill, NC. The event was co-hosted by Extraordinary Ventures, a model employer of adults with autism. Extraordinary Ventures was founded by Autism Speaks supporters and parents Lori and Gregg Ireland.

The meeting brought together many premier scholars on adult autism issues, as well as Autism Speaks representatives, autism service providers, parents and donors. My husband, Peter Emch, and I were invited to participate as parents and long-time supporters of Autism Speaks. The very fact that Autism Speaks included parents in an event like this is hugely meaningful, because it grounds the research agenda in real-world experience and need.

Moderated by Autism Speaks Chief Science Officer, Geri Dawson, Ph.D., the meeting provided the opportunity for investigators to present overviews of current research projects funded by Autism Speaks and for all participants to ask questions and share ideas. The morning session showcased studies aimed at describing autism spectrum disorder (ASD) in adults, while we spent the afternoon with prescriptive research involving topics such as how to improve interventions.

Morning keynote speaker Marsha Mailick Seltzer, Ph.D., of the University of Wisconsin’s Waisman Center, outlined “Trajectories of Development in Adolescents and Adults with ASD.” Afternoon headliner Paul Shattuck, Ph.D., of Washington University, discussed “Service Use and Outcomes among Youth with ASD.” I found it interesting that both Seltzer and Shattuck noted that, despite few published studies on adults with autism, there is an abundance of data awaiting analysis. This means that we need to be investing resources in finding the meaning in the information that’s already available.

As a parent of a young adult with autism, it’s gratifying to sit in a room with so many smart, energetic people and learn that they want to bring their talent and enthusiasm to bear on the same issues that worry me as a parent. I’m also a special educator. As such, I’m so glad to see researchers demonstrating concern for how academic findings translate into real-life practice. While it’s crucial that we continue to deepen our understanding of what life is like for adults with autism, it’s just as important to make immediate progress in improving their lives.

I was especially excited to hear so much conversation on the topic of our adults as learners. As a society, we tend to think about the autism service system for adults as involved exclusively in care giving. Rather we need to develop dynamic supports that provide ongoing opportunities for personal growth and development. The summit allowed those who are studying adult needs to connect with those who are examining skill-building models. It’s this type of collaboration that fosters new programs that not only look good on paper, but also work in the real world.

Finally, participating in an event like this reminds me of how important it is for families to understand that they are integral to the research process. Sometimes we feel as though investigators go about their work in ivory towers without understanding the real needs of those on the ground. As families, we must be active participants in the research process. Not only in the sense of filling out questionnaires and providing information, but in terms of actively making use of the knowledge emerging from this research. That doesn’t mean we need to bury our noses in scholarly journals. It does mean that we need to enter into thoughtful discussion with scientists about how to incorporate what they are learning into what we need from adult service providers. Good scholarship is being conducted through Autism Speaks funding. As a community, let’s not allow it to happen in a vacuum.

Sounds like a great event, very inclusive. Parents, educators, doctors, and adults with autism commenting on their day-to-day struggles from a first person perspective. Oh, wait…that last one wasn’t mentioned, because it likely didn’t happen. Who would have a meeting about a group of people and not invite those people to speak? Autism Speaks, just not where anybody can hear them.

As a parent of a youth wirh Autism,
I have just switched careers and am now
Going to grad school to become an advocate for the Autism community. I am learning how research works as I begin to work on my own thesis. The focus of this summit was the research being done and how it will impact families and adults with ASD. Families needs are being met thru this new and important research. Their voices
are loud and clear.

loki

January 31, 2012 at 10:48 pm

As an autistic adult, I respectfully disagree. Families aren’t autistic adults, autistic adults are autistic adults. We, as individuals need help and research done for US, not for our families. We are important and deserving by our own merit, not because our mommies and daddies say we are.

I have no involvement with my family, and for good reason. Not everyone had the family I had, but even those with a great family deserve to be recognized as individuals worthy of self determination and basic human rights. Autistic or not, verbal or not, high or low functioning, we’re PEOPLE because we are, not because of our parents., and we have needs and wants and desires of our own, separate from that of our families.

I’m tired of being turned away from the limited services my community offers because I don’t have a mommy and daddy to sign me up and sit with me. I’m twenty and married. I can’t even shower without a step by step guide. I have an IQ of over 160, am a published poet, and am unable to speak about 25% of the time. I made hollandaise sauce on my very first try with no help no measuring and no recipe after reading three recipes the night before, but I can’t go shopping because walmart has shouting ad screens that send me into overload.

I am a person. I am autistic. I am an adult. I am competent, intelligent, and capable. I deserve the same respect as any other adult. I deserve the same consideration, self determination, and accommodation as any other disabled person. I need help and strategies to navigate MY everyday life. Not my parents life. I definitely don’t need all the help available cut off because I won’t let someone say their needs are my needs without consulting me.

Andrew

February 1, 2012 at 7:48 am

Chris, are you saying, then, that actual adult autistics did not need to be there? Because if the mother and father of an adult with autism should be there, why not an autistic adult as well?

chris peters

February 1, 2012 at 11:02 am

to Andrew and others, what I was trying to say, and I didn’t say it very well, is that the researchers are working with the adults with ASD, their families, communites, etc, that is where your input – all of it – needs to be heard. the researchers report on their findings – which IS your voice, your needs, lack of needs and what we as a society will do to address this. you all are the most important piece but it comes at the beginning – where ever the reseach is being conducted. I would encourage you all to participate in research, join the IAN site. this is how we will get things done, fixed, changed in our society. This conference was, just the report card of what you all have said in the research. I hope I am saying this correctly, I am still learning how this all works, myself.

The researchers’ voices are important — but the researchers are usually not autistic. That’s why it’s wrong and insulting to tell us: ” … the researchers report on their findings – which IS your voice.” (If I researched Chris’s life in detail, would that make me “Chris’s voice”?)

“This conference was, just the report card of what you all have said in the research.”

Where in the conference was what “we all” have said? And if it’s “the report card,” why weren’t we asked to take a look? Even kindergarteners are allowed to see their own report cards …

Re:
“I hope I am saying this correctly, I am still learning how this all works, myself.”

Learn this: what you are saying shows how deeply you fail to understand the concerns we’re raising. If you want a report card, I’d give you a D. (The only thing that saved it from an F is that you give signs you just may be actually starting to realize that the conference acted at our expense,. If you don’t show further improvements in comprehension and empathy, your grade on the net report card won’t be as high.)

I don’t see any mention of adults with ASDs participating. It sounds like its assumed that all the attendees are parents. Notice the use of the “as parents” phrase when the keynote speaker speaks “inclusively” of herself and the audience. Why not “as parents of adults with ASDs and as adults with ASDs ourselves….” Because there are none of the latter expected to be in the audience. All the talk of parents going beyond the “caregiving” focus means nothing until the “caregivers” start including the adults in the conversation.

chris peters

February 1, 2012 at 10:55 am

Loki – that was so well said! I hope to be able to advocate in exactly the areas that you mentioned, for my son and for all adults with autism. I believe that all adults with any disability have every right to live their life with the supports they need, in the way they want. have you reached out to the adult autism groups? I know GRASP is one of them, and I know there are more out there too.

It didn’t include us. As I said in my reply to Andrew’s post above, the keynote speaker is not addressing us as part of the audience, and even when she talks about going beyond the ‘caregiving’ model, its as if she and her audience are going to allow it for others – meaning us, their children.

How bout actually letting some adult autistics speak? Not only can many of us do so, many of us are just dying to be heard. We have rather relevant first-hand knowledge and insights to share. Stop ignoring us, or perhaps, change your name.

Excluding autistic adults from a conference on autistic adulthood (or not mentioning that we were there, IF we were welcome at all) is as irrational as excluding parents from a conference on parenting,

One again, Autism Speaks shows that it has little understanding of lifespan issues around autism. One lifespan issue is the access of Autistic adults to the venues that purport to “help” us. A conference on Autistic adults, with no Autistic adults participating? Glad y’all had fun and helped each other out, made each other feel appreciated and so forth. This is why organizations like the Autistic Self Advocacy Network are so badly needed. This is why projects such as the Loud Hands Project http://www.indiegogo.com/The-Loud-Hands-Project will go far to correcting such glaring omissions. This is why it is a shame that Autism Speaks has been so successful in bleeding autism-related money from more community-oriented organizations and projects.

Re:
“As someone who is “High” functioning.
I’m thinking that the “Low” functioning, will get all the benifits, based on there condition.”

Very likely — and here are just a couple of the problems with that:

/1/ Autistics of _all_ types get counted in the stats that organizations use for fund-raising: especially whenever the stats label us “an epidemic.” If we are worthwhile to use as numbers for fund-raising, then we’re worthwhile to benefit from the funds raised.

/2/ Helping only those who need the most help (those who need the largest investment from others in order to function competently) amounts to telling everyone else who needs help; “Go away! The help you need is less, and costs less, than the help someone else may need — so we won’t help you!” Probably, the time/effort/interventions/other resources that are needed to create a good life for one “low-functioning” person (or whatever is the current Poltically Correct term) are enough to enable five or ten or twenty of us “higher-functioning” folks to create good lives for ourselves (and thereby for others — our “low-functioning” brethren and sistren among them.) Since the autism organizations ask “high-functioning autistics” for money and support and participation in publicity events, any autism organization that wants my participation, my support, and/or my money must show me that it is benefiting _all_ autistics — not just those who are sufficiently “low-functioning.”

I agree entirely with the above comments in that adults with ASD should have the opportunity to speak on their own behalf and be at the core of the discussion.

Given that, there WAS an adult with ASD present at the conference. He had equal opportunity to speak, ask questions, and engage the panelists as they spoke about their research. He voiced to me on multiple occasions throughout the day that he was encouraged by the discussions being had and it brought him hope given that adults with ASD haven’t been the focus of a majority of the research/learning discussions in recent years past.

This conference was a good starting point. In its limited agenda, the conference certainly did not cover all topics and may have had some shortfalls. The suggestions you all have made will hopefully be incorporated in conferences to come. Adults with ASD should be part of these discussions.

What I am finding is that there is a lot more attention where I live on children and young people transitioning from school who have autism

Where is the discussion about helping adults like me take care of an older person with autism. My son is age 38, I am age 73 and having health and arthritic issues. I have my son living in his own apartment with a 24/7 caregiver and he goes into the community daily. Especially because of his lack of communication, he needs a person with him all the time to help him and intrepret his language….what little there is of it. The people with higher level individuals and issues can’t relate to my son.

And who takes over when I die? . I do have a younger married son who is very busy with a one year old and a newborn. How do I prepare for the future when I am gone and he is still busy with young ones of his own? I am an only child so I have no siblings to help.

When you have discussions do you forget about these different ones with autism?

The people with higher level individuals and issues can’t relate to my son.

Uh, pardon me, but I have very little speech myself. I can not shower myself, live alone, hold down a job, spontaneously communicate, and many other things. There is a lot of worry over who will care for me if my husband dies (he’s significantly older than me and in poor health.) That still doesn’t mean I want someone else making decisions for me unless *I* indicate I want them to do so. I have no family to care for me, and we have no one else to help, and yes, I DO take this into consideration when I have discussions. Having difficulty communicated/requiring aid/inability to live alone has no baring on whether or not you deserve as much self determination as you can handle, and just because someone is considered “high functioning” by most people does not mean that they don’t have some of the same concerns as your child, or can’t give input on what it is like to be someone with Autism.

Martha, you hit the nail right on the head! Your struggles and concerns are being felt by thousands of people everyday and there needs to be a heightened focus on post adulthood, independence, and meeting the individual needs of adults with ASD. Before we’re able to implement any adaptive strategies we need substantive research to act on. That is what this conference was about.

This conversation is many years behind its time. Now we’re trying to play catchup.

How nice to know that,
oh, yes, “there WAS an adult with ASD [Autism Spectrum Disorder] present” —
but how disquieting that there was only one

Why only “an” autistic adult? Why only _one_ present?
Why wasn’t his participation mentioned in the originl write-up
about how many different sorts of people had attended the conference,
and how “inclusive” it all had been?
What purpose does it serve, among (probably) hundreds or thousands of people
organizing and attending such a conference,
to have “an” autistic adult?

Out of the (probanly) millions of autistic adults in the USA,
couldn’t the united efforts of “Autism Speaks” and “Extraordinary Ventures”
find or attract more than one?

Imagine that this had been a conference about (let’s say) blind people. First, tHe conference write-up makes it seem as though nobody blind was included … then, after this draws unfavorable comments,, someone comes aling andremembers that, yes, there’d been one actual blind person involved? What would this indicate about the mind-set of the people organizing and remembering the conference?

When an organization’s/conference’s state of affairs is such that
having (apparently) just _one_ autistic participant in a conference on autism
is a sign of “hope” —
then things are glaringly bad.

Having one autistic person, speaking on equal terms, at a conference,
Is a needed and welcome sign of hope — in the sense that
having a single drop of water in the desert is a sign that it might, eventually, rain.
A one-drop rainfall on the Sahara is hopeful — but is not enough.

What are “Autism Speaks” and Its members/partners doing
to create a better climate or us (autistic adults) within and beyond your organization?
Can you (“Autism Speaks”) make yourselves into an something
that many autistic adults would be active in — and would _want_ to be active in?

To Martha — Many of us who are classed as “high-functioning” now were classed as “low-functioning” when we were younger adults/teens/etc. (For example, I’ve met a 50-something “high-functioning” adult who was classed at 30 as “low-functioning.”)
The biggest — often the only — difference between a “high-functioning” and a “low-functioning” adult (autistic or otherwise) is that the “high-functioning” one has established a channel of communication with other people. This is why “high-functioning autistic” person has much better odds (compared with a non-autistic person ) of being able to understand and convey what is going on in the non-autistic person’s mind.

Re “Where is the discussion about helping older adults like me take care of a peron ith autism” — at almost every autism conference I’ve ever attended, this has been a big topic. (Often, it was the major or _only_ topic in sessions about autism and adults.)
Also, i note that this blog’s write-up of the conference we’re talking about syates specifically that at least one of those issues was covered (health care).

I didn’t attend that conference (I do not attend”Autism Speaks” conferences), so I do not know if that subject was covered at that conference. If you attended the conference (or any conference) and it wasn’t covered well — I suggest that you.bring it to the urgent attention of the conference organizers.
_All_ autism issues deserve addressing.

Kate, I appreciate your sentiments but I must say that you’re taking a very “can’t do” approach to the issues at hand. The conference was a group of 55 individuals. It’s purpose was to share information amongst researchers and discuss the topics of their research. It is the beginning of the conversation and a launchpad for progress to come. Given many of your comments, and to include Extraordinary Ventures in your rant indicates to me how little you actually know about this conference, those involved, and its intentions. EV is a community based business that employs ONLY adults with ASD both high and low functioning.

Your thoughts should be heard and some of them acted upon. I agree that adults with autism should be involved, advocate on their own behalf, and all-in-all be empowered to lead fulfilling lives just as someone who is neurotypical. However, to bash an organization (EV) that is doing exactly what you’re advocating for severely hinders your case.

(Analogy:
noticing one raindrop in a desert
isn’t a “can’t-do” approach to problems of desert irrigation —
it’s explaining why the problem must be tackled,
and pointing out that one drop of water won’t do it.)

Thanks for the info that the conference had 55 participants.
If just one out of 55 people, at a conference about autistic adults,
was an autistic adult, plainly we are still (as you say) at the beginning.

I’m indeed unfamiliar with Extraordinary Ventures (E. V.): I’d never heard of them (or of the conference they co-hosted) before chancing on Ms. Pavlides’ blog-post.
So you have my thanks, Stephen, for the info on them: t’s great to learn about this firm, and I will add it to my notes about businesses of this type. (As you recollect, it wasn’t obvious from the original posting that all E.V. employees are on the autism spectrum.) Your posting impels me to find their web-site — which the original posting had not made me want to do.

Thanks also, Stephen, for agreeing with at least some of my points. I m pleased and surprised by that. (Remember, it wasn’t so long ago that there were staff in “Autism Speaks” and other autism organizations who would not respond to adults with autism spectrum conditions: Even as recently as three years ago, ,it was not unknown for organizational receptionists or conference-table staffers to switch to “talking down” — or to just end the conversation — once an inquirer mentioned being on the spectrum.) Things are beginning to be different: like many on the spectrum, I look forward to seeing how far “Autism Speaks” and others can can get beyond old mind-sets,. New activities and emphases are, as you say, just a “launchpad”: if anything tt anyone’s written here provides a needed “course correction” on the journey, the benefits will be lasting. As with any mission, yours has many yes upon it.

Stephen (and Dr. Pavlides, and anyone else who knows) — are only the employees of E.V. Autistic, or also the management? I couldn’t find out from the web-site whether this was an all-autistic company, or a company with neurotypical management over wuistic labor.